Media Center
Media Contact:
Duane Peters, VP Advocacy & Communications
202-349-1145 - peters at lupus.org
The Lupus Foundation of America is the nation's leading nonprofit voluntary health organization dedicated to finding the causes and cure for lupus. Our mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure.
The LFA website serves as the most comprehensive resource for lupus-related news and information worldwide for individuals with lupus, their families and health professionals. The LFA encourages members of the news media to use information published on this site in stories about lupus. Please cite the Lupus Foundation of America, Inc. as the original source.
We also encourage you to provide your audience with the Lupus Foundation of America's national toll-free numbers: 888-38-LUPUS (888-385-8787), en Español (800) 558-0231, and our web site address, http://www.lupus.org . If you need additional information or would like to interview a representative of the LFA, a lupus medical expert, or a person with lupus please contact the LFA Department of Communications at 202-349-1145.
Basic Facts about Lupus and the Lupus Foundation of America
The Disease
Lupus is a chronic autoimmune disease that, for unknown reasons, causes inflammation and tissue damage to virtually any of the body's own cells, tissue, and organs - especially the skin, joints, blood, heart, lungs, kidneys, and brain. The body's immune system normally makes proteins called antibodies to protect the body against viruses, bacteria, and other foreign materials called antigens.
In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and the body's own cells and tissue. Unable to make this distinction, the immune system then produces antibodies that target the body's healthy tissue causing inflammation and damage to vital organs.
Lupus is a very complicated, confusing and erratic disease. It can range from being a mild disease affecting only a few organs, to one that can cause serious and even life-threatening health problems. Two major causes of morbidity and mortality from lupus are kidney disease and heart disease.
Learn more .Types of Lupus
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The Search for a Cause
The cause(s) of lupus is unknown. While scientists believe there is a genetic predisposition to the disease, it is known that environmental factors also play a critical role in triggering lupus. Some of the environmental factors that may trigger the disease are
- infections,
- antibiotics (especially those in the sulfa and penicillin groups),
- ultraviolet light,
- extreme stress,
- certain drugs, and
- hormone levels.
Although lupus is known to occur within families, no specific gene or genes have been identified that have been confirmed to cause the illness.
Lupus strikes mostly young women of childbearing age, although men, younger children, and older adults also develop lupus.
Lupus is two to three times more common among women of color than among Caucasians. People of African, American Indian, Hispanic, and Asian origin are thought to develop the disease in disproportionately high numbers. The reasons for this ethnic selection are not clear. The symptoms of the disease are the same in men and women.
Learn more. What is Lupus?
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Impact of Lupus
Obtaining an accurate count of the number of individuals affected by lupus is difficult because
- there are several forms of lupus,
- the disease affects each person differently, and
- there is no test specific to diagnose lupus.
The Lupus Foundation of America estimates that 1,500,000 Americans have a form lupus. This estimate is based on two nationwide polls that asked respondents if they, or anyone in their immediate household, ever had been diagnosed with lupus. In addition, another poll revealed that 28% of all Americans know someone with lupus.
According to a Lupus Foundation of America membership survey, approximately one in three people with lupus also has another autoimmune disease, and nearly half of all lupus patients have another family member with lupus, suggesting that lupus runs in families.
Not only is lupus the prototypical autoimmune disease, autoimmune diseases are the fourth leading cause of disability among women.
- Approximately 35% of lupus patients surveyed have received disability benefits and 28% are presently on disability, with the majority receiving government-sponsored payments.
- Another 38% have stopped working due to health complications of lupus.
- Tragically, most of the individuals disabled by lupus are impacted at a young age, which means they could be on disability for many years.
The average annual cost to treat a case of lupus is $6,000, which translates to $8 billion annually for medical expenses due to lupus. When you include disability payments and lost productivity, the impact of lupus on the U.S. economy is staggering.
Learn more .Statistics About Lupus and Lupus Fact Sheet
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Diagnosis and Treatment of Lupus
Lupus can be difficult to diagnose because there is no single test that can tell whether a person has lupus or not. An LFA survey revealed that half of the lupus patients responding reported they saw three or more doctors over four or more years before obtaining a diagnosis of lupus.
Common symptoms of lupus include
- achy or swollen joints,
- extreme fatigue,
- fevers,
- skin rashes, especially in the shape of a butterfly across the cheeks and bridge of the nose,
- anemia,
- excessive protein in the urine,
- pleurisy,
- photosensitivity,
- hair loss,
- abnormal blood clotting,
- fingers turning white and or blue in the cold,
- seizures, and
- mouth or nose ulcers.
Lupus is a complicated disease that can affect many different organs. It is an unfortunate reality about lupus that there is no cure. However, medications are available to treat symptoms of the disease. These medications include
- nonsteroidal anti-inflammatory drugs (NSAIDs),
- acetaminophen,
- corticosteroids,
- antimalarials, and
- immunosuppressive drugs.
Some of these drugs can cause other health problems through their use over time. While clinical trials are underway on several new therapies, no new drugs to treat lupus have been approved for several decades.
Although most lupus patients respond well to treatment and go on to live a normal life span, lupus can quickly become life-threatening. Tragically, many patients die from lupus complications every year. Some people with lupus require frequent hospitalization. Treatment of lupus requires the participation of many different medical specialists and expensive specialized testing and procedures. It is not uncommon for a person with lupus to take a dozen expensive medications at a time.
Learn more. FAQ and Brochures
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The Lupus Foundation of America
With nearly 300 chapters, branches and support groups in 32 states, the Lupus Foundation of America (LFA) is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. Our mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education, and patient services are at the heart of LFA's programs.
The LFA energetically pursues its mission through the following five program objectives:
- Provides direct financial support to researchers through LFA's Five-Year Research Support Program .
- Advocates increased public and private sector support for biomedical research on lupus.
- Translates research findings into medically-sound information and programs for physicians and other healthcare professionals.
- Heightens public awareness of the causes and consequences of lupus.
- Supports individuals with lupus, their families and caregivers.
LFA's Leadership Role
As the field's national leader, the LFA plays a key role in bringing together all stakeholders -including researchers, clinicians, government officials, industry leaders, and other national partnering organizations - to focus national attention on lupus and its impact, stimulate additional public and private-sector investment in research, and provide support and hope to individuals and families who are directly and indirectly impacted by lupus. The LFA Board of Directors has established a wide-ranging strategic plan aimed at advancing lupus as a significant national and international public health issue.
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LFA Services
The LFA operates programs of education, awareness, patient support, advocacy, and research. Every year, the LFA serves thousands of individuals, including people with lupus and members of their families. The LFA delivers services through the National Office in Washington, DC and through its nationwide network of chapters, branches, and community-based support groups. The LFA also works in partnership with many other national partners as well as an international coalition of lupus groups who serve people with lupus worldwide.
Education
The LFA is the authoritative source for medically sound information on lupus. Many of the nation's leading lupus researchers and clinicians volunteer their time to develop patient educational materials and write articles for LFA publications.
Thousands of people call the LFA information line every month (800-558-0121). Many callers are newly diagnosed lupus patients seeking information about the disease. The LFA's Internet site provides worldwide access to information. The LFA publishes an award-winning national magazine, Lupus Now, with a readership of more than 100,000.
Learn more. Lupus Now and Education
Awareness
The LFA creates awareness by producing and placing public service announcements on national and regional broadcast networks, on cable and satellite channels, and in major newspapers and magazines. The LFA works with producers, editors, writers, and reporters to increase the exposure of lupus through the news media.
Learn more. Awareness
Patient Support
Local LFA chapters operate support groups for people with lupus and members of their family. Support groups meet under the auspices of a trained leader. Speakers from the medical community frequently lead discussions about various aspects of lupus, including the latest medical research findings, disease management, stress reduction and treatment options. The LFA provides referrals to physicians, treatment centers and services, and answers basic questions about the disease. A free Lupus Information Packet provides basic information, a list of local chapters, and details about services available through the chapter.
Learn more. Support and LFA in Action
Advocacy
The LFA works in partnership with the U.S. Department of Health & Human Services and the National Institutes of Health to stimulate medical research, public awareness, and services for people affected by lupus. By educating government officials about lupus and its health impact, the LFA insures that proper resources will be made available to lead the fight against the disease.
Learn more. LFA Advocacy
Research
It has been nearly 40 years since a new drug has been approved by the U.S. Food and Drug Administration specifically for lupus. The LFA is working to bring down barriers that have obstructed progress on this disease. To help accomplish this important goal, the LFA launched a Five-Year Research Support Program to advance biomedical, clinical, epidemiological, behavioral and translational research that will help accelerate the pace of medical discovery in lupus with a goal of making clinical trials more feasible.
Under the direction of the Medical / Scientific Advisory Council, the LFA solicits research proposals from teaching centers, hospitals and educational institutions nationwide. After the LFA awards a grant, the Council monitors the research project and disseminates information on the findings.
Learn more. LFA Research
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